Wednesday, August 31, 2005

How to make a list We enocurage patients to make lists, so they remember what they want to talk to their doctor about. However, lists often put many doctors off, because they are too long or too disorganised. Here are some excellent suggestions on how to make a list so you can communicate better with your doctor. Hint: Make 2 copies and give one to your doctor, so he is on the "same page" as you are !

Time Has Come to Apologize: Risk Management Foundation: A report on the "first public discussions in the Boston area medical community about the need to use apology to maintain the relationship between providers and patients who have been injured and to improve care and communication." It's OK for doctors to say sorry !

Patient Advocacy A patient advocate is not a lawyer who is suing on behalf of the patient ! A patient advocate can be very useful in helping you to get the best medical care. This article show you what advocates are; what they do; and how they can help you.

Celebrity American dermatologists are using their skills and prestige to sell anti-ageing, wrinkle-busting products both in pharmacies and in their surgeries. "The whole sector is exploding," says Dr Bruce Katz, who sells products from his office. "Cosmetic companies are rushing to get aboard. They know this is the next big thing." But bioethicists worry that doctors will put profit ahead of their patients' welfare. "You're going where the money is," says Dr Arthur Caplan, of the University of Pennsylvania. "If my doctor is an entrepreneur, maybe I don't want that guy to be my dermatologist." Certainly the marketing of so-called cosmeceuticals is a potent mix of the austere dignity of science with the seductive glitter of Madison Avenue: sober packaging, photos of white-coated doctors, scientific- sounding names...

Drug Promotion Database: "“There continues to be an imbalance between commercially produced drug information and independent, comparative, scientifically validated and up-to-date information on drugs for prescribers, dispensers and consumers.”" This website
documents this imbalance and prescribes possible solutions to combat the underhanded promotional techniques pharmaceutical companies often employ in order to sell their drugs.

Principles to Promote the Quality of Life of People with MS: "Principles to Promote the Quality of Life. " To enhance the lives of people with Multiple Sclerosis, this report presents “principles” to improve Quality of Life. An excellent model for all patients with chronic diseases. This website is also a very good example of what an international patient support group can accomplish !

Between May and August 2005, HSCNews International conducted a global survey of health campaigners. The survey asked campaigners about the user-friendliness of their national healthcare systems. Respondents commented on six key indicators of system user-friendliness. The indicators were:

(1) Access to a second opinion.

(2) Same-day access to a doctor in a non-emergency situation.

(3) Availability of private health insurance for care that is not reimbursed by the main healthcare system.

(4) Access to repeat prescriptions.

(5) Access to personal medical records.

(6) Access to round-the-clock medical advice and information.

The survey received responses from 406 health campaigners from 38 different countries. The groups participating in the survey specialised in a wide range of healthcare issues and diseases.

Summary of survey findings:

Despite the willingness of politicians in many countries to make patients’ needs paramount, and the existence of legislation and policies to promote the cause of healthcare users, this HSCNews International survey found that none of the healthcare systems around the world could be regarded as truly user-friendly.

That said, Western Europe performed best in the survey. Some 30-50% of the 108 participants from the region affirmed that their country performed well for the six HSCNews indicators of user-friendliness. Just behind was Australasia and the Pacific Rim, where national healthcare systems performed at a level similar to those of Eastern Europe. The countries of North and Central America, by contrast, were among the worst performers in the survey. Approval ratings from campaigners in the region never reached higher than 31%.

One of the survey’s most surprising findings was the poor rating that the 41 respondents from Canada gave their country’s healthcare system. Canada has long claimed a high-quality healthcare system that provides universal access. Yet Canadian health campaigners responding to the survey were scathing about their healthcare system’s ability to give access to doctors in non-emergency situations, access to repeat prescriptions, access to medical records, and access to round-the-clock healthcare information.

Canadian respondents indicated that a national shortage of GPs and specialists, coupled with a patriarchial attitude among the medical profession, are to blame for the inadequate user-friendliness of their country’s healthcare system. According to one respondent, 40% of people living in Ontario do not have access to a family doctor. Another respondent explained that, despite the shortfall in numbers of medical professionals, Canadian doctors are usually unwilling to write a repeat prescription without seeing the patient because these consultations supply income to the doctors.

Canadian respondents told HSCNews that Canadian patients who cannot get access to the care they think they need are sometimes forced to travel to other countries to receive it, or (if they cannot afford that) to put themselves forward as candidates for clinical research.

NB Did you notice the error in the title ? The word about is repeated twice. This just goes to show it's hard to pick up errors unless you are actively looking for them ! When it's so easy to miss such a gross error while reading, imaging how much easier it must be to overlook errors in your medical care. Let the patient beware !

Tuesday, August 23, 2005

Too much choice can be a nightmare for patients, according to a feature in the New York Times. "Many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming," reports Jan Hoffman. Although doctors are trained to respect patient autonomy and patients are often well informed after researching their ailments on the internet, their well-being can suffer nonetheless. People want to feel a part of their health care," says David Mechanic, a medical sociologist at Rutgers University in New Jersey. But they don't want to be abandoned to making decisions all on their own. When a doctor says, 'Here are your options,' without offering expert help and judgement, that is a form of abandonment."

However, doctors who are hard pressed for time and worried about malpractice suits may find it hard to walk their patients through the decision-making process. Another problem is that more and more doctors are pursuing medical specialties rather than becoming old- fashioned family doctors. This can mean that there is no one to coordinate a patient's care.

This is the blessing and the burden of being a modern patient," observes Hoffman. "A generation ago, patients argued for more information, more choice and more say about treatment. To a great extent, that is exactly what they have received: a superabundance of information, often several treatment options and the right to choose among them." But sometimes the range and complexity of the options can make them unhappier than ever. A patient's lot might have been easier when he was told what to do. ~ New York Times, Aug 14

Lance Armstrong is a living legend today - the man who beat cancer and then won the Tour de France- a record seven consecutive times ! I just re-read his book, It's Not About the Bike, and I found it inspiring. I believe the following extracts would be useful to any patient, no matter what illness they are battling - whether it's cancer or infertility.

The more I thought about it the more cancer began to seem like a race to me. They shared grueling physical aspects as well as a dependence on time and progress reports every interval , with checkpoints and a slavish reliance on numbers and blood tests . The only difference was that I had to focus better and hard up than I ever did on the bike .

I became a student of cancer . I went to the biggest book store and bought everything there on the subject . I came home with ten different volumes: diet books, books on coping emotionally ,meditation guides. I was willing to consider any option no matter how goofy.

From that moment on my treatment became a medical collaboration. Previously I thought of medicine as something practiced by individual doctors on individual patients. The doctor was all-knowing and all- powerful, the patient was helpless. But it was beginning to dawn on me that there was nothing wrong with seeking a cure from a combination of people and sources and that the patient was as important as a doctor. No one doctor could take sole responsibility for the state of my health, and most important I began to share the responsibility with them.

I wanted the foundation to manifest all of the issues I had dealt with in the past few months: coping with fear, the importance of alternate opinions, thorough knowledge of the disease , the patient’s role in cure , and above all , the idea that cancer did not have to be a death sentence . It could be a route to a second life , an inner life , a better life .

What if I had lost ? What if I relapsed and the cancer came back ? I still believe I would have gained something in the struggle , because in what time I had left , I would have been a more complete , compassionate and intelligent man , and therefore more alive . The one thing the illness convinced me beyond all doubt is that we’re much better than we know . We have unrealized capacities that sometimes only emerge in a crisis. So if there is a purpose to the suffering that is cancer , I think it must be this : it’s meant to improve us.

What I really admire about him is he put all his suffering and experience to the best use possible – he tried to help others suffering from cancer by setting up the Lance Armstrong Foundation. And by helping others, he helped himself most of all !

Like most bloggers, I enjoy reading. It's hard to source books in India, and new books can be expensive. However, the second hand books on www.amazon.com are brilliant value for money ! I buy them online, ship them to a dear friend in the USA, who then M-Bags them to me - and an M-Bag costs only about US $ 1.00 for a pound of books, which makes the shipping affordable too ! This is how I buy most of the books for HELP, the world's largest health library for people.

Saturday, August 20, 2005

Traditionally, medical negligence has referred to incompetent doctors who have failed to provide good quality medical care to their patients. I feel that a much bigger problem which has been negelected so far is that of patient negligence. Even in this day and age, when patient educational materials are so plentiful and so easily available, it's tragic to see such few patients making use of them. Most patients are still happy to leave everything upto their doctor, and they rarely bother to verify the accuracy of what they are told. When something goes wrong, it's these same patients who then blame the doctor, without realising that they are as much to blame because they have not bothered to do their own homework. If information therapy is the best medicine, then not taking your medicine means you are also partly responsible for a bad outcome !

Friday, August 19, 2005

The only good thing about managed care seems to be its name ! It will come as no surprise to physicians that managed care (as practiced) does not improve patient care. Turns out it doesn't even cut costs. According to an article published in the May /June 2004 issue of Health Affairs, the United States continues to spendmuch more on health care services than on any other industrialized nationdespite more than 10 years of managed care. The article, based on datafrom the Organization for Economic Cooperation and Development (OECD),shows that at $4,887, U.S. per capita healthcare spending in 2001 washigher than comparable spending in all other OECD countries. In addition,many industrialized countries have higher physician- andnurse-to-population ratios than the United States has, according to thearticle, which notes that the supply of U.S. physicians per capita grewonly 1 percent per year between 1991 and 2001.

found on:www.medscape.com/viewarticle/507380_print Medscape General Medicine 2005 Posted 1st July 2005talks about open access publishing, first made possible by the Internet with full text published articles available free of charge to all - meaning free to doctor and free to patient.

Dr George D Lundberg, MD Editor in Chief, Medscape General Medicine quotes the following free resources in his References re: article he wrote:

So, now that patient has medical information from above free reputable sources.....

The next thing is how does the patient best use medical information sourced from above websites?

I personally believe that the best way for a patient to use medical information obtained from the internet is solely for the purposes to find out more about the condition that their doctor has already diagnosed. As opposed to reading articles in order to diagnose a specific condition yourself. Remember you are the patient. Not the doctor. We go to doctors to diagnose us. We go the internet for more information about the doctor's diagnosis.

If this distinction is clear in your head, you will always find information on the internet useful, rather than confusing or scary.

Medical articles talk about things in general only. They are not applicable to a particular, specific person. However your doctor's diagnosis is specific to you.

I don't believe a patient can become a cyberchondriac from internet medical articles. A patient can take medical articles to their doctor for discussion during future doctor/patient consultations. It's very natural for a patient to wish to find out more about their diagnosed condition. There is not enough time during a patient-doctor consultation to discuss everything and also can't telephone a doctor each and every time a patient may have a new query about their particular condition.

The internet should supplement a "patient - doctor" visit. eg Rather than the doctor worrying that the patient is being misinformed by over abundance of an assortment of medical information available on the internet, the doctor can help their patient by recommending some good websites that their patients can go to for further information about their diagnosed medical condition/disease/ailment post consultation. It's too late to turn back the clock. Medical information is here to stay on the internet.

The best way for doctors to control the medical information their patients look at - is maybe to have their own website and describe common diseases/ailments/medications, procedures etc. That way the doctor can say to the patient at the end of the patient/doctor consultation: "Well Mary...if you want more information on eczema for example, just go to my website and you will find an abundance of information etc." That way the doctor can help to control what sort of information their patient actually looks at. Not all doctors though, have their own websites.

Even though patients may not have scientific/medical terminology, I think that most patients have common sense. ie Just because a patient may look at articles on the internet, and try to see how these may or may not relate to them, does not make them a cyberchondriac. In actual fact printing medical articles and bringing them in for discussion at next medical consultation may be mutually beneficial to patient and doctor.

Beneficial to patient because the patient gets what-ever out of their mind, and also beneficial to doctor, because the doctor has the chance to put what-ever into perspective for the individual patient. Additionally, should the doctor disagree with something in print, they have the obvious power to do something about it!! ie Write to the author of the medical article.

Sometimes, it's beneficial for the doctor to know what the patient is thinking. And by patient bringing in an internet article for discussion, the doctor has the chance to alleviate their patient's fears by saying - this or that does not relate to you specifically because of what-ever reasons. eg Article talks in general. "Not specifically to you - Mary" for example. Sometimes the patient can not express what they are thinking or feeling very clearly because they are nervous or embarrassed and sometimes an internet article can be an "ice-breaker" and even though sometimes the doctor may laugh about the internet article that the patient has brought in for discussion, the doctor at least is then aware of what is going on, inside of the mind of their patient. Because sometimes when a patient is not feeling too well, they can not articulate their concerns. Especially about embarrassing gynaecological matters (for example).

The most important aspect to remember when reading about medical articles on the internet is that they are just articles. They do not necessarily relate to you as an individual patient. Your own doctor has to examine you. However, once doctor has examined or assessed your own individual risk of a medical condition or has actually diagnosed you with a particular condition, the internet is a vast source of information that can make you feel a whole lot better, simply by being able to read more about your diagnosed condition.

As a patient, the more you know about something, the more empowered you may feel. I am sure that there are studies somewhere that show that the more a patient knows about their medical condition, the more better they may feel about it, just because of their increased knowledge of their medical condition, and this thereby may help their healing. (I'm sure there would be articles on the internet about this!!!)

To the doctors who may be infuriated about the cyberchondriac, I say to these doctors that such patients were already hypochondriacs long before free medical articles became available on the internet.

Also, the doctor has to remember that even though there are heaps of medical articles on the internet, the patient always knows only a fraction of what the doctor knows. The patient looking up medical articles is usually aware of this fact. ie I am always aware that no matter how much internet research I do about a particular medical condition, that my doctor will always know more about it, than me. The depth of knowledge that I know as a patient will always be a tiny fraction - compared to the depth of knowledge that my doctor knows about the same medical condition. Because, I, as a patient, know only through reading. My doctor on the other hand, knows from doing. From practice. From it being his lifelong profession.

HELP is a free consumer health library I run in Bombay. It's now the world's largest, and the website is at www.healthlibrary.com. My biggest problem is getting people to use the free services we offer. I've been told that the problem is because we give away our services for free, which is why no one appreciates them. I am sure I don't want to charge for what we do, so I am stuck as to how to increase our usage ! Any ideas ?Leo Burnett very kindly designed a clever logo for us, and I hope this will help !

In the past, when people had fever or diarrhea or vomting, they would try home remedies and wait to get better. Tincture of time would help most illnesses get better, because most problems are self-limited, and the body heals itself. Today, however, whenever someone has a minor ache or twinge, they run to their doctor - and the very rich will go to a specialist directly. What a shame ! In the past, the doctor had little too offer, except holding the patient's hand till he improved. Today, the pills and potions doctors have are so powerful, that they can often cause considerable harm, with the result that the remedy is often worse than the disease ! Unrealistic expectations and the urgency to "get-well-quick" just make the problem even worse.

Friday, August 05, 2005

How to get a second opinion: "A common problem we have seen is that many infertile patients are very reluctant to change doctors, even when they are unhappy with their present doctor. Often this is because they prefer being passive and refuse to take matters in their own hands - 'better the known devil than the unknown one'. This is a guide to help you get a second opinion - without antagonising your current doctor ! "

Tuesday, August 02, 2005

Stop making yourself miserable: "Being infertile is bad enough - but unfortunately many infertile couples compound their misery by adding to it ! Tom Robinson has an excellent website at www.chronicillnesscoach.com, where he coaches patients with a chronic illness ( such as Crohn’s disease) how to take better care of themselves. He points out that the chronically ill can make themselves unnecessarily miserable, and I found it fascinating that infertile couples often end up making these very same mistakes !"

Monday, August 01, 2005

The Search for 100 Million Missing Women - An economics detective story. By Stephen J. Dubner and Steven D. Levitt: "The Search for 100 Million Missing Women An economics detective story." Here's a much more plausible explanation for the changing sex ratios in India. It may not be because of widespread female feticide, as so many NGOs would have us believe, but rather because of silent hepatitis B infection in pregnant women, maybe because the female fetus is more likely to be miscarried when exposed to the virus.
It's sad that policy formulators in India have so facilely accepted the explanation that female feticide accounts for the changing sex ratios, without
bothering to look for evidence which would prove this hypothesis.

While it is plausible that the sex ratio is changing because of female feticide, this needs to be proven with raw hard data. If this hypothesis ( that the decline in females born is due to female feticide) is true, then the only explanation for the missing girls is that they have all been aborted. Now, the only inexpensive commonly available method of fetal gender determination uses ultrasound. Since this can be used to determine gender accurately only after 14 weeks ( since the fetal external genitals are visible only after 12 weeks) , this means that if selective female feticide needs to be performed, the doctor would need to do a second trimester abortion. This is a fairly complex medical procedure, which is usually performed only by gynecologists.
The 2001 Census figures for Punjab show that there are 1.7 million boys between the age of 0-6 years. If the sex ratio were normal (0.95) , we would expect to have 1.6 million girls. Since the census shows there are only 1.35 million girls, that means 250000 girls are “ missing “. If the newborn girls are missing because of abortions done after fetal sex determination as claimed, this means that 250000 mid-trimester abortions would have had to be carried out in Punjab in the past 5 years – a virtual epidemic of abortions , because this would mean 50000 mid-trimester abortions a year ! Mid-trimester abortions are like mini-deliveries, and are fairly complicated to carry out. They can be done safely only by a skilled gynecologist. It would be a simple matter to verify the number of abortions carried out in Punjab because most abortions are carried out in Govt recognized centers.( Since abortions are legal, there is no need for doctors to perform these on the sly , so one would expect all the abortions performed to be documented, even though the reason given for terminating the pregnancy may be false.) If the study shows that the number of abortions is not so high, this means that the hypothesis is not true, no matter how appealing and logical it may be. We then need to search for an alternative explanation for the declining sex ratio, rather than blame illegal sex determination procedures for this ! Such a study is important because it is the only way of proving the proposition that female feticide is altering the sex ratio, and will lend valuable support to the demand that the laws which ban female feticide be more strictly implemented. Why hasn't such a study been done ?

Unfortunately, activists prefer appealing to emotions by talking about the need to protect the “girl child” ! However, without supporting data, a theory is just speculation .We need to learn to analyse reports objectively , and to separate facts from opinion , specially when we deal with such important areas as citizen’s reproductive rights! Why has no Indian newspaper bothered to carry the story ?

It would be sad if we've been barking up the wrong tree all this time. We would have wasted a colossal amount of money - and ended up with egg on our face as well.